You can’t exercise the way you used to. You’re depleted after a day of work. Or you may have unusual sensations, like a racing heartbeat when you stand up and difficulty concentrating at times.
Could it be long Covid? And if so, how can you find out and get the medical care you need?
As many as 23 million Americans are affected by long Covid, a March federal government report estimated, which occurs when people experience persistent and often worsening or new symptoms more than a month after a Covid-19 infection. Even those who had mild cases with their initial infection can experience symptoms weeks later.
Many people find it difficult to get care, with doctors dismissing symptoms,not knowing what to do or even giving damaging advice, patients and doctors say. For now, there is no cure for long Covid, but finding the right doctors and tests can give you a better chance of improving and learning to manage your symptoms.
Here are care-seeking strategies recommended by long Covid doctors and patients.
It’s been more than four weeks and I still haven’t fully recovered from my Covid-19 infection. Do I have long Covid?
Not necessarily. Doctors say some people take longer to fully recover from a viral illness but eventually do without needing any kind of specialized care.
There is no standard definition of long Covid. The Centers for Disease Control and Prevention defines the condition as having new or ongoing health problems four or more weeks after your initial infection. The World Health Organization defines it as occurring within three months of an infection, with symptoms lasting at least two months.
Some doctors say if you’re still feeling sick four to six weeks after Covid-19 you should see your primary-care doctor. You may have symptoms that can be explained by something else, like fatigue from anemia or a thyroid condition, and it helps to rule out other issues.
Common long Covid symptoms can include cognitive issues, a racing heartbeat when you change position and extreme fatigue, particularly afterphysical or mental exertion.
What if I’m still not feeling better after three months?
This is the time frame when you might want to look for a long Covid clinic or find a doctor who is familiar with long Covid and has treated other patients.
“We typically start to get concerned about folks with persistent symptoms about 12 weeks after their initial acute infection," says David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York City.
Long Covid clinics, which some medical systems have set up to coordinate specialized care, have different thresholds for entry. Some,such as Stanford’s, see patients three months after infection. Others, like Cleveland Clinic’s, start seeing patients a month after infection. Mayo Clinic has a program for patients with symptoms one-to-three months post-infection, and another for those whose symptoms persist beyond three months.
Many long Covid clinics currently have monthslong waits, so it is worthwhile trying to get on wait lists as soon as you can.
What kind of doctor should I see?
There are more than 60 hospitals and healthcare systems that have started long Covid clinics and programs, according to Becker’s hospital review.Survivor Corps, a long Covid advocacy group, also has a list of centers, as well as “Covid-friendly" doctors.
A good primary-care doctor will refer you to specialists based on your symptoms. You want to find someone with experience in treating postviral illnesses, recommends Lauren Nichols, vice president of Body Politic, a patient-advocacy group. Another helpful kind of doctor is an immunologist, who can perform more-detailed and granular blood work that primary-care doctors typically aren’t familiar with, she says.
Are there any red flags I should be aware of when looking for a doctor?
Avoid doctors who suggest your symptoms are all the result of depression or anxiety, Dr. Putrino says. If your doctor says your tests are normal and ends the conversation there, that is a bad sign, he says. Attributing symptoms to deconditioning andencouraging a quick return to exercise should also raise a red flag, because too much physical activity too soon can make your symptoms worse, Dr. Putrino says.
What tests and screenings should I ask my doctor to do?
Most clinics conduct blood work to look at indicators such as blood counts,vitamin levels, virus reactivations and inflammatory markers. Many centers also do pulmonary function tests, echocardiograms and EKGs to look for lung or heart abnormalities.
Physical-therapy evaluations can also be useful. And patients experiencing brain fog can undergo standard neuropsychology or cognitive tests.
A tilt table test, which measures changes in heart rate when you go from lying down to upright, can help diagnose whether you have POTS, or postural orthostatic tachycardia syndrome. A common diagnosis in long Covid patients, it can cause symptoms such as dizziness, extreme fatigue and big fluctuations in heart rate and blood pressure from small movementsor when standing.
Often, long Covid patients find that many tests come back normal, buta good doctor should continue to pursue answers and investigate if you’re still experiencing symptoms. “That doesn’t mean you’re not suffering and that you’re not having issues," says Monica Verduzco-Gutierrez, professor and chair of the department of rehabilitation medicine at theUniversity of Texas Health Science Center at San Antonio and director of their Covid Recovery Clinic.
Is there anything I should avoid as a new long Covid patient?
Don’t push through it. One of the most common symptoms of long Covid is postexertional malaise, which can make exertion—physical, cognitive, or emotional—exacerbate your symptoms.
Practice energy conservation techniques such as pacing. And if you’re going back to work, take it gradually if you can. Ask for accommodations if you need to. A lot of patients will go back full-time and find they can’t handle it, Dr. Verduzco-Gutierrez says.
“Go back part-time and build up slowly while you’re still recovering," she suggests.
Is documentation important?
Document evidence of a positive Covid-19 test—even an at-home rapid antigen test—and make sure your doctor puts it into your medical chart. This will help you get into a long Covid clinic and can help get approvals for insurance coverage and disability claims.
Documentation like a positive POTS diagnosis from a tilt table test, or a physical therapy or cognitive evaluation, can help with applications for workers’ compensation or disability, says Kristin Englund, an infectious-disease physician at Cleveland Clinic who started the long Covid clinic there last year.
Make sure your doctor specifically and objectively measures the severity of your symptoms using established scales, Dr. Putrino says. Rather than having a subjective note on fatigue they can say, “The patient’s fatigue was objectively scored using the Fatigue Severity Scale."
When will I recover?
There is no hard data on recovery trajectories; patient recovery paths vary. If you’re sick beyond three months, full recoveries aren’t the norm, butsome patients report improvements in their symptoms over time.
New symptoms can occur and old ones can come back. Recovery isn’t linear, Mrs. Nichols notes.
“People need to be aware of the roller-coaster effect which you can have with this disease," Dr. Englund says.
